Hunter came to live with us on his third birthday. He wasn’t potty-trained yet, and we began working on potty training immediately. We were fairly successful with bladder control, but we weren’t making a dent in bowel control.
At first glance, Hunter looked like every other three year old on the block, but anybody who spent quality time with him for any duration quickly realized he was not. His gross and fine motor coordination were awkward and clumsy. His speech resembled that of an 18 month old, although he appeared to understand the majority of what was said to him.
We already knew he was lactose intolerant, so in the beginning, it was easy to blame his lack of bowel control on diet. There must have been something with lactose in that casserole. However, Hunter could tolerate things like cheese and yogurt with no apparent issues. Then the doctor explained to me that cooked lactose didn’t cause the same bowel issues that raw lactose did. Perhaps Hunter was only sensitive to raw lactose.
We had several doctor’s appointments that summer, but it wasn’t until the middle of August 2005 that I finally convinced the doctor to dig deeper into our concerns about Hunter’s developmental delays. After a day of intensive testing, including blood tests, urine tests, full body x-rays and a cat scan, at 5:00 P.M. I received a call from our pediatrician.
“I know what’s wrong with Hunter,” he said. “He has hydrocephalus.”
I knew what hydrocephalus was but he went on to explain it anyway. He said we needed to make an appointment with a pediatric neurologist at University of Iowa Hospitals, which he said he would do immediately.
In the end, though, because of Hunter’s apparent worsening condition, stumbling, falling, shakes, tremors, headaches, lack of appetite, our pediatrician decided to ask a favor or neurologist, Albert Menzes, who agreed to see Hunter the next afternoon. Hunter was scheduled for shunt surgery the following Thursday, and at a follow-up appointment in October, I learned Hunter had cancer, an inoperable tumor on the midbrain.
Because Dr. Menezes had already concluded Hunter did not have a tumor, this set my world spinning. He explained that Hunter’s brain had been so flooded, the tumor couldn’t be seen until the excess cerebral fluid had been drained from is third and fourth ventricles in his brain.
Because of his gross and fine motor coordination delays, because of his speech delays, it was easy to blame the bowel issues on the hydrocephalus, the cancer, an invasive shunt surgery in the beginning. However, after Hunter had a series of 28 radiation treatments when he was 4 ½ years old, and extensive occupational, physical and speech therapies for a couple of years, my gut instinct began to tell me the bowel issues were something more.
Because cancer and treatment of cancer is a priority first and foremost in the medical community, the bowel issues always simmered on the back burner of treatment. Finally, when Hunter was 8 years old, we began to have new health concerns. His growth curve was arching steeper and steeper, his weight going from the 50th percentile to the 70th percentile to the 90th percentile. I began to become concerned the radiation treatments may have damaged Hunter’s endocrine glands, and his neurologist agreed with me that it was time to look into it, so he made an appointment with a pediatric endocrinologist for us.
On our own, we had attempted to increase whole grains in our diet, thinking we needed to improve what we were eating for everybody’s sake. Immediately, we noticed a dramatic increase in Hunter’s bowel accidents. When we had an appointment with the endocrinologist, I finally brought up celiac disease. We explained there had been times when his bowel control seemed to improve, and then what had happened when we put him on the whole-grain diet regime, that his lack of bowel control increased exponentially.
This doctor sent us to a gastroenterologist after Hunter showed some gluten sensitivity on a blood test. We quickly took him off of the whole grain diet, and started focusing on corn, oats and rice in our diet.
Fortunately, the gastroenterologist has determined Hunter does not have full-blown celiac disease at the moment. Because Hunter is sensitive to the gluten grains, it’s been recommended we steer clear of them as much as possible. We immediately noticed an improvement when we changed his diet to accommodate fewer glutens.
Hunter does not have to avoid glutens one hundred percent. He still eats school lunches if there is something he likes. He still eats things at the church co-ops along with everybody else. However, we order gluten-free pizza when we’re eating out now, and we’re talking about the food pyramid, eating something from all the food groups, and avoiding obvious foods high in wheat, rye or barley.
Hunter is now 10 years old, and we’ve been working on these diet changes for two years. There are still occasions when he has loose stools that are hard to control, when he gets gassy bellyaches or stomach cramps. We read labels now, though, and shop in the gluten free section of the super market.